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The Royal College of Psychiatrists Improving the lives of people with mental illness

Review - A layperson's view of 'Understanding Psychosis and Schizophrenia'

Why people sometimes hear voices, believe things that others find strange, or appear out of touch with reality, and what can help 


When I heard the British Psychological Society (BPS) had brought out this new report I was keen to read it.  My late brother suffered with years of psychosis and was diagnosed ‘schizophrenic’ in the late 1970s. 

Our mother had, a few years before this, herself begun suffering from extreme ravages of spirit – states of wild animation and frenzy alternating with the blackest despair (‘manic depressive illness’, as it was known then) – and my brother’s subsequent suicide at the age of 19 naturally exacerbated the family’s problems. 

Following the birth of my daughter, at the age of 37, I myself succumbed to life-denying depression and, after taking antidepressants, about fifteen years of apparently inescapable cycling illness. This was finally stabilized with the help of an exceptional psychiatrist, lithium and having learned my weaknesses and needs better.  So I am approaching this review from the point of view of someone who’s no stranger to the territory, with a keen interest in what the psychologists have to say.

At any time over all these years I’d have done anything to have been given a handbook like this!  An initially daunting 100+ pages of text is broken down into short digestible chunks of background, explanation and discussion and written in accessible, everyday language.  Each section of text is clearly and attractively laid out, with a summary of key points at the start, and punctuated by a wealth of personal stories and individuals’ reflections in green speech bubbles (for easy reference).  Space is used well; the text is not crammed tight. This makes the document easy and pleasant to read..

Understanding Psychosis
Anita Klein’s vividly coloured, fluid and beguiling cover and interspersed full colour plates whispered to me of enhanced experience, altered perceptions and perhaps transcending the veil between our ‘reality’ and the realm of spirit. I couldn’t stop looking at them. For me, set in this context at least, they reinforced the message that the experiences in question can indeed be very beautiful, enriching and life enhancing and are not destructive and frightening for all people - or, at least, all of the time.  More poignantly, they spoke of how things might be able to be for people who have heretofore been misunderstood if they were afforded the greater understanding and support of both their ‘healers’ and, critically, their communities.

 

 

I was a little sceptical when I read the claim that the report ‘provides an overview of the current state of knowledge (in the field)’, but after studying it in one long day’s sitting I have to say that – apart from finding it compulsive reading – I was impressed by the wide range of reflections and perspectives it offers, and the overview of, broadly speaking, ‘alternative’ approaches to therapy/support – i.e. alternatives to the medical model.

The authors’ manner of presentation is objective, matter-of-fact and in no way patronising.  Terms that could be seen as technical, or as jargon words, are simply translated immediately afterwards – e.g. ‘continuum = a line joining two ends of a scale’. You really get the feeling, as you read through, that great effort has been made to make the material universally accessible – to those who can read English, at least. 

We are encouraged to question concepts like ‘scientific fact’ and claims vis-à-vis research.  I particularly like the way the narrative jumps in to provide a down-to-earth example after every statement that might sound a bit far-fetched, obscure or confusing, as in this instance: ‘The way people make sense of and react to their experiences can be very important in determining how distressing and disabling (the experiences) go on to be. To take an example: if someone is sleep deprived or feeling anxious, and then hears someone walking behind them in the street, they might fear that the person is following them or about to do harm to them’.

A well-known profoundly deaf UK Paralympic runner with cerebral palsy came to do a motivational talk at our local deaf school. He told the children you need to become ‘the boffin of your own condition’, as then you win back the power to influence the situation and to change what you’re experiencing.  A survivor named in Understanding Psychosis reflected: “What was the point in fighting if I was going to be suffering from a lifelong brain disease forever?” But then after 15 years of psychiatric intervention, like me, she met someone who was willing to listen. This was the turning point.  She recalls: “I was able to break out of being a victim and start owning my experience,” and adds that she doesn’t see herself any more as ‘a psychiatric patient with an insupportable diagnosis’, but as an overcomer who has become an activist for change in the mental health field, now able to develop a range of coping mechanisms’.

The first four sections of the document explore the concept ‘psychosis’ and the next three look in some depth at potential causes.  We hear about new and interesting areas of research, like epigenetics – ‘the study of how parts of our genetic mechanisms are ‘switched on’, ‘turned up’ or ‘turned down’ by the things that happen in our lives’ – and neurochemical theories of brain treatment.  The authors are admirably restrained on the subject of the pharmaceutical industry and its historic, highly questionable relationship with the medical profession, conveying a single-minded desire for an across-the-board focus on positive change and less of one, at this time and in this context at least, on how we got to where we are right now.

We are told: ‘the report is intended as a resource for those who work in mental health services, people who use them and their friends and relatives, to help ensure that all conversations are as well informed and as useful as possible.  It also contains vital information for those responsible for commissioning and designing both services and professional training, as well as for journalists and policy makers’.  

After years on ‘the other side’, it is refreshing to see cultures in mental health care beginning to change and to understand here that, rather than playing lip-service to ‘person-centred’ approaches, these psychologists genuinely want to place information and the option of informed choice within the hands of the families who are suffering as the result of emotional distress/ ‘medical’ interventions.  Even to see those who use services mentioned higher up in their lists of intended recipients, just as drug treatment options are consistently considered last of all in the ongoing discussion, feels like a pleasing correction of balance.  One question I might ask would be how the document can be made available to those who don’t use services, or even attend GP surgeries, and also to speakers of other languages.  Self-help and education are just as crucial for such people and, as the genuine aim of the authors is ultimately to keep people from even needing services, this is an important consideration.

Understanding Psychosis is evidently designed to be dipped into repeatedly, and the material is readily accessible due to a really comprehensive and clearly laid out contents list. References are grouped by chapter at the end, along with a goldmine of websites to explore – first person accounts, service user/survivor websites, details of mental health organisations, and a bibliography with titles arranged under subject headings like ‘Psychological and social approaches to ‘psychosis’’, ‘Self-help organisations and the service user/survivor movement’ and ‘The psychiatric drugs debate’. 

Although the document is available to download, most of us find it difficult to read a large amount on a screen and it would be very expensive to print at home. Happily, it has been made available free either way.  It can be downloaded here: Understanding Psychosis and Schizophrenia or individuals can order a hard copy, one per person, by emailing membernetworkservices@bps.org.uk.  Mine arrived within just a few days.

This really is an excellent service the BPS are providing.  In my opinion this publication emphatically needs to get into the hands of the people, both the public and staff, who are grappling with the issues it addresses (both as comprehensive initial information and something to come back to revisit and dig deeper), and getting it out there is the stated aim of the team who produced it over a two year, inspired collaboration. It is head and shoulders above anything similar I have ever come across before; that it is being offered to non-professionals and professionals alike is a first, in my experience. I hope it will set a new tone.

We have generally been held at arm’s length by mental health services, and duped into thinking we’re being looked after by ‘experts through their use of scientific sounding words and concepts –  ‘surgery’, ‘evidence-based’, ‘clinical’ and so on – and by oblique suggestions in drug names - which strongly imply they will improve your competence or enhance your perspective on life, for example.  I believe this report will be a revelation to many genuinely motivated, but heretofore partially misguided, staff as well.

Naturally even key issues can only be touched on in a document of this size which has already been very ambitious in its scope.  The authors go on to discuss the myth that psychosis leads to violence explaining that, on the contrary – as a result of media hype, and our consequently fearful and prejudiced society – mental health service users are much more likely than others to become victims of violence.  The authors discuss the fact that more people are likely to develop psychosis if they’re poor and living in inner cities, and that the problem is worse in societies where there’s more inequality between rich and poor. The key role of hope is stressed, and that ‘it is vital that long-term, open-ended, high-quality support is available’. 

Apparently, up to 10% of the population hear voices at some point in life, and when hallucinating or hearing things is discussed in the context of sleep deprivation, for example, most of us might stop and wonder whether we’ve come into this category.  It is very interesting to read about bodies of influential research having been based on assumptions, and that only about half of clinicians can agree on a given ‘mental health’ diagnosis. What’s new is seeing this information in black and white, presented openly by professionals to patients and families!

Just as it stresses ‘experiences are on a continuum and don’t fall into neat categories’ the report itself feels refreshing and balanced, aiming to inspire questioning rather than offer slick solutions.  It’s always careful to qualify received value judgements when discussing them. For example, it follows the statement ‘It is widely assumed that psychosis has a biological cause’ with the reflection: ‘to date we do not have firm evidence for any specific biological mechanisms underlying psychotic experiences”.  We are also told: ‘our knowledge of what might have contributed, and what might help, is always tentative’ and ‘it is … important that we try to understand the full complexity of the person’s situation, and bring it together…, so that we can offer the most appropriate forms of help’. 

I was surprised to read: ‘The role that life experiences can play is becoming clearer … in other words, ‘bad things happen and drive you crazy’’ (my italics).  For me, the shocker is that such obvious facts have been officially ignored and progressively played down for so long - as the sway of medicalization became so powerful - that they apparently need to be restated almost as new discoveries.  But the exciting news is that the recent discovery and increasing understanding of neuroplasticity means we’re not necessarily stuck with the damage life has dealt us – it’s possible to change and heal, at least to some extent.

The relationship between spirituality and people’s positive experiences of ‘psychosis’ – or even the positive directions in life they gained from experiences that weren’t necessarily pleasant at the time – is explored in Section 7, raising the question that if altered states of mind can have value, what is there (in such instances)  to recover from?  Clearly some of the interviewees felt the answer to this question is ‘nothing’, but someone expressed ‘concern for the spiritual difficulties facing individuals entering the mental health system’ and the ultimate dignity issues encountered there, especially where someone is held involuntarily and subjected to compulsory treatment.  The psychiatric approach has traditionally been to try to control symptoms and ignore any content of ‘psychotic episodes’ (as ‘not worthy of understanding or capable of being understood’).  A survivor poignantly reflects: “We want to incorporate our insights into our lives, not to bind them in protective wrapping or carry them around with us as hidden baggage”.

Leading us into the What can help area of the report, section 8 introduces us to the concept of the ‘psychological formulation’.  It reminds us that ‘diagnosis in mental health is really a process of categorising rather than explaining experiences’, while ‘unlike a diagnosis, a formulation is based on the assumption that, however extreme, unusual or overwhelming the nature of the distress, ‘…at some level it all makes sense’’. 

The National Institute for Health and Care Excellence (NICE) has recommended that psychological therapies should be available to everyone who experiences distressing psychosis.  In reality, good psychological therapists are available to fewer than one in ten eligible people; far fewer in most areas.  Sessions with psychologists themselves are even harder to come by.  Ideally, Understanding Psychosis recommends solid and comprehensive support for the families of those suffering with psychosis and also touches on the non-directive Open Dialogue therapeutic approach which originated in Finland and is gradually being adopted in the UK. This methodology requires that all decisions are made communally in meetings. Strikingly, fewer than a third of Open Dialogue clients are prescribed neuroleptic drugs. 

Section 9, Self-help and help from families, friends and communities emphasises the valuable, sometimes critical, need for sufferers to combat isolation, find acceptance and peer support. The related concepts of ‘recovery’ and self-help (perhaps using structured plans) are discussed here, and this leads on to the authors stressing the importance of receiving sensitive crisis care and, where possible, early intervention.

The absolute need for crisis and recovery houses in all areas is stressed, alongside issues of compulsion, deprivation of liberty, power and trust, and the fact that our government is failing to uphold ‘the basic ethical principle of reciprocity’. That is, just as we are legally obliged to comply with programmes of treatment or ‘care’ the authorities should be held under a parallel obligation to provide safe, appropriate services, including after-care.

Reflections from both historical giants - for example, Edgar Allan Poe and John Stuart Mill - and from contemporary high-profile sufferers, for instance, boxer Frank Bruno and Clare Allan (a former inpatient and author who writes The Guardian’s ‘It’s My Life’ column) punctuate the document, alongside references to the pioneering work UK mental health charities are doing – for example, Mind’s seminal Learning from Experience report (2011). 


The authors’ impressive command of both historic and contemporary thought and opinion is amply displayed as they survey ‘the contested area of mental health’, discussing individual survivors’ comments and international, timeless perspectives alongside the current, influential guidelines of policy makers such as The Health and Care Professions Council and NICE.

Section 10 acknowledges that ‘emotional support and help with practical issues such as work and employment, benefits, housing and relationships is often as important as help targeted directly at ‘symptoms’’.  It emphasises that our basic needs must be met first and foremost, and looks at our need for emotional support and for protection from self-harm (but also, for autonomy; a challenging conundrum).  A subsection actually acknowledging in its title the ‘Risk of harm from services’ concludes: ‘A more sophisticated approach is badly needed’. 

The recovery model, focussing on reducing distress and ‘helping people to live the kind of life that they want’ (inasmuch as possible) ‘whether or not the experiences continue’, is touched on, and we discover that one of its key tenets is that mental health workers don’t insist that people ‘see their difficulties in terms of an illness’. 

Section 11 moves on to discuss in some detail the various ‘talking therapies’ currently on offer in some parts of the UK.  It insists: ‘It is vital for people to be able to talk and think about their experiences in a calm, supportive and non-judgemental atmosphere.  This underpins all forms of helping’.

I was interested to discover that there’s a special version of CBT – CBTp – designed for people who’ve experienced ‘psychosis’, and to read about voice dialoguing, avatar therapy, cognitive remediation and narrative therapy, among others.  I also like the idea of radical collaboration (even just the name!), although for me the shocker is that the understanding of the human condition that we all possess when it comes to our families and our friends, somehow went out of fashion in the ‘healing’ arena.  It reminds me of the way that people can observe animals in evident emotional pain and yet insist that they don’t have feelings.

There would need to be a major reallocation of current health spending in order to sufficiently fund the report’s proposals. The range of services would not be cheap, as person power is one of the most costly resources, and psychological support offered with integrity would, by definition, need to be potentially open-ended. 

However, it is always expensive to install new infrastructures, and it seems only logical that further downstream a healthier, more mutually-supportive community with reduced sickness and more of us in secure employment would cost less to sustain.  Even in the current set-up, adjustments in perspective, focus and attitude can be made, but ultimately the authors stress: ‘we need a culture change in services such that the psychological understanding described in this report informs every conversation and every decision’.

Discussing medication, it’s acknowledged that many people find antipsychotic medications have some uses (although their effect tends to be general rather than specific, and they produce ‘additional effects’ along with the useful ones), but the risks and benefits of each proposed medication regime should always be carefully weighed up especially where people are parked on pharmaceuticals, or drugs are juggled and changed over long periods of time.

Personal remarks captured here betray varying experiences and opinions. One man reflects that he feels through the medication he has ‘been given back his life’. However most others, even where some benefit has been gained, seem ambivalent at best.  Someone forcibly injected under constraint muses: ‘in losing periods of madness I have come to pay with my soul’. Others echo this sentiment saying the drugs can make you so doped up you hardly feel alive. One lady’s words seemed to sum up many peoples’ experience: “Illness was scary, but not half so scary as its so-called cure”.

Understanding Psychosis is a well-written, systematic and passionate document that is based on reasonable observations and assumptions.  It is remarkable in that the authors manage to present their emotive material and ideas so objectively. To me, this betrays more than anything else their sincerity and belief (informed by their professional discipline) that the urgent need for systemic change and a shift in our collective consciousness is the only way forward to greater well-being, both personally and as a true community in the future. 

Personally, I was convinced of its validity and importance before I got to the rallying cries calling for a sea change in services, commissioning, professionals’ attitudes and practice, and ‘the replacement of paternalism with collaboration’. But I was further impressed as its authors deftly wove together all the strands introduced in the main body of text into their impressive concluding statements.

Beginning with an alarming but beguiling extract from a named survivor’s heart-rending, fictionalised account (where a woman, who ‘in desperation ... seeks asylum in a place that is meant to provide sanctuary for her’ is devastated when her terrifying experience there ‘nearly drives her over the edge once and for all’), the final section of the document, What we need to do differently, is split into two parts: What mental health services … and, What we all… need to do differently.  

I like the way that the authors end by charging professionals (including all psychologists) directly with the task of taking action to redress the imbalance by adopting a different perceptual position; to shift from assuming a sense of superiority and perceived ‘expert’ status - from ministering to ‘the diseased’ - to ‘seeing [themselves] providing skilled help and support to people who are experiencing understandable distress’.

So the text concludes with a focus on the principles of mutual respect, a genuine concern for dignity and the need for services to be informed by basic human kindness and common-sense.  This is based on the deep understanding that we need to meet human expressions of distress and pain with human responses in order to make healing, and true integration in the community for those with unusual experiences, a possibility. 

 

Understanding Psychosis and Schizophrenia, The British Psychological Society

Edited by Anne Cooke

A report by the Division of Clinical Psychology


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Carry on caring blog

 

Nicky Heywood

 

Nicky Hayward is a carer who has been helping support her mother through multiple bipolar episodes for many years.  She is involved as a Lived Experience expert/ carer representative with a number of organisations, including the RCPsych, UCL, UWE and the Mental Health Alliance South West. 

Nicky is keen to add her voice to the growing number of those, of both grassroots and establishment figures, who are genuinely trying to precipitate a quantum leap in the way mental health care is approached and delivered in our society, and is convinced it is imperative as many of us as possible take advantage of the current window of opportunity: a palpable groundswell of willingness to regroup and return to the drawing board.  She has survived to face another day largely by being able to see the latent humour in the deadly serious and harnessing the power of irony in the battle to effect lasting change.


If you would l 0ike to contribute to our Blog Zone series, please email an outline of your blog to: jburnside@rcpsych.ac.uk